It started as a dare — a simple boredom buster to keep the hospital blues at bay. Now the stakes are higher and it’s time to complete the walk one last time.
In answer to Saanvi’s raised eyebrow, I shook my head slightly; I had to do this by myself. She nodded and passed me a piece of paper. A lump rose in my throat as I tucked it into my pocket. I gave her a tiny smile, knowing that she would understand why I couldn’t talk. Not now.
Saanvi bent and inspected the level of my oxygen tank as I took several slow breaths, trying to calm myself. As she straightened, I gripped her hand and gave it a little squeeze to express my thanks. Anyone else would think I was crazy, trekking through the hospital in the middle of the night, dragging an oxygen bottle behind me, but not Saanvi. She understood that this was important.
As I took my first step, I focused on the doors at the end of the ward. One step at a time, one foot after the other. If I thought of the whole route, it would overwhelm me. On the other side of those doors was a lounge, I could have my first rest there. Step after slow step, my lungs heaving with the effort, I set off with the wheels of the cart holding the oxygen bottle travelling smoothly over the even surface.
I ran down this corridor my first night. At sixteen my veins were thrumming with adrenalin. Back then, Saanvi seemed like an opposing figure of law and order. Her ward ran like clockwork, and I was sure my midnight escapade wouldn’t fit into her guidebook of how hospital patients were supposed to behave.
Convinced that she was going to pop her head out of another patient’s room and order me back to bed in that strict matronly voice that I’d heard her use on troublesome patients, I waited. Peeking my head out of my door every so often until I deemed the path clear, before bolting towards the ward doors, I breathed a sigh of relief as they closed behind me.
I paused for a second; hardly daring to believe I’d made it, before jogging down the steps, through the dark and silent main corridor of the hospital. I hadn’t stopped to marvel at how peaceful and quiet it was, for during the day this corridor was a hive of activity. I jiggled with impatience as I waited for the service elevator to take me down to the bowels of the hospital.
It took less than five minutes to reach the morgue, that first time. Back then it hadn’t taken me long to catch my breath. The locked box was exactly where Oliver said it would be. I fumbled with the numbers and laughed with delight as the combination lock sprung open.
Inside was a simple exercise book, the cover, in Oliver’s neat writing proclaimed, “Welcome to Club Med(icine) where laughter is the only prescription.”
Tonight, it took me three minutes to reach the end of the ward. I sank with relief into the lounge chair, gasping. A tear trickled from the corner of my eye, and I wondered if maybe it was time to admit defeat. I closed my eyes and tried to level my breathing. As I did, I felt their presence. I pictured their faces; one by one, the Club Med gang. Most were so young; only two like me who’d lived to see their 29th birthday.
I nodded my thanks to them. I might be the only one physically walking, but I wasn’t alone. As long as I could breathe and set one foot in front of the other, I would continue. I was the last person standing, Cystic Fibrosis hadn’t won this war yet.
As the elevator doors opened, I made my way inside, the wheels on the cart catching as it rolled over the bumps. I pressed the button for the ground floor and instinctively looked at the opposite corner. I’d never been able to take this elevator without thinking of Cassandra.
She’d stood in the corner, her hand clasped over her mouth, horrified eyes peeking at me. At first, I thought she was in shock. “Are you okay?” I asked, taking a step closer. She pressed her back into the corner of the elevator, leaving me in no doubt that I was the cause of her fear. When the doors opened, she hurtled past me and disappeared into her room.
I realised, at that moment, that the walks might have an endpoint. Raised to fear the possibility of cross-infection, this generation wouldn’t be interested in our traditions. I hoped that once they were adults, they would realise the benefits of friendship far outweighed the chance of cross-infection. But my hopes were in vain.
Cassandra was the first to react as if I had the plague, but not the last. Most stayed tucked in their rooms, never venturing into the common areas of the hospital, or if they did, it was with wide, scared eyes and their faces hidden behind masks. The ‘no-contact policy on any terms’ was a message blasted at them from both medical staff and their parents. To them, contact was a risk without payoff. To us, our friendship had been everything.
When the elevator pinged and the doors slid back to reveal the main corridor of the hospital, I started off again. My oxygen bottle rattled slightly in its cart as it coasted along behind me. To anyone watching, my slow shuffle would have seemed like window shopping as I passed the dark shops. I fixed my eyes on a chair opposite the courtyard and pushed myself to reach it before my next rest. Like many of the chairs dotted along the corridor, this one had a laminated sign above it that read, ‘Take a load off. This chair proudly sponsored by the Physio Department.’
Without light, the small courtyard opposite was gloomy and silent.
We’d held a party in the courtyard the night Tina was initiated into Club Med. She was the youngest, the last of what I called the ‘social generation’ to transfer from the children’s hospital. She’d been looking forward to this admission for weeks, something that should have filled her with dread. When her swabs results showed we were culturing the same bacteria, and allowed to share a room, she squealed with delight, her concern that she was going to be stuck in hospital for two weeks all alone unfounded.
At 11.30 she started looking around our room, muttering, “The last number I see after midnight.” Other than directions to the morgue, it was the only clue I was allowed to give her. By the time Saanvi brought in our midnight antibiotics, Tina had flopped back onto her bed. But once hooked up to the IV pole, she seemed to revive. Standing on her bed, she looked over her medication bags. Muttering combinations of numbers.
She cast a quizzical glance at me, and I pretended to be engrossed in my book. I’d gone through the same moves and could tell she was about to arrive at the same conclusion I had. The number must have something to do with the timing of midnight antibiotics, but it couldn’t be the medication itself, as everyone was on slightly different cocktails and doses. The saline bags were the only constant, and at 50mls they didn’t have enough digits for a combination lock.
Tina sat for a while; her arms crossed while she watched the slow drip, drip, drip as the antibiotics made their way through the line and into her veins. We’d pushed our buzzers at nearly the same time, and I could see her frustration as Saanvi returned. She hadn’t quite given up, but I could see she was close to tears.
Saanvi bent over Tina first, flushed her infusaport and disconnected the IV line. She gave Tina’s arm a little pat and said, “Lights out, sleep tight.” Tina’s eyes lit up at once, she started to bounce impatiently giving me a clear indication she’d realised what the last number she would see after midnight, but before she went to sleep was. I deliberately made small talk with Saanvi while she flushed my infusaport. I asked about her cat, before cheekily mentioning I felt a hankering for a curry. Saanvi promised to bring a pot the following night for everyone to share.
Tina was nearly bouncing out of her skin by this time, and as the door closed behind Saanvi, she said, “The last number I see after midnight.” I nodded. On exaggerated tiptoes, she made her way to the door, then down the corridor. I watched from our doorway. The minute the ward door shut behind her, the rest of us ‘inmates’ were in action, heading down to the courtyard.
When Tina skipped past on her way back to the ward, Greg let out a whistle. We stayed up until 3 am that night, listening to the radio that Sarah brought along, singing to ‘Video Killed the Radio Star,’ talking and laughing. We ordered pizza and had it delivered to the hospital carpark.
CF manifested differently in all of us. It’s a relentless progressive disease that has no rhyme or reason. At 19, Oliver’s health took a tumble, and he’d slipped into the severe stage of the disease. His admissions had grown longer, no more the standard two-week tune-up; now it took three or four weeks of antibiotics. And, like many redheads he was a stubborn bugger, refusing to yield an inch, constantly removing his oxygen tubing because he thought he could ‘breathe better’ without it. At 18 my lung involvement was less complicated. Usually, I was only admitted twice a year — occasionally three times if the winter had seen fit to pass on a particularly nasty flu.
So it was ironic that Tina, the youngest and the last member of Club Med was the first to fall.
A few short weeks after she’d skipped past us, she’d contracted pneumonia. Her left lung collapsed, and four weeks of antibiotics failed to halt her raging infection, and she was deteriorated with the rapidness of an express train. Oliver sat with her every night after her parents left. Saanvi begged him to get some rest, but Oliver refused. Tina didn’t deserve to die alone, and he made sure she didn’t. It was 3 am when she passed, Oliver holding her hand as her mother hadn’t made it back to the hospital in time.
The tone of the phone was strident, waking me. Oliver’s voice was husky, like many with CF his throat scarred from excessive coughing. “She’s gone,” He said simply.
Without thought, I instantly replied, “I’ll walk tonight.”
At 12.30 am I stood in the foyer of the ward. One by one, the other members of Club Med joined me. When Oliver finally emerged, sans oxygen, he was already breathing hard. I pointed to the ward wheelchair, parked near the elevator. “Can I push you?”
Oliver shook his head. ‘I’ll walk.’
It was a sombre walk. At the morgue, I unlocked the box and flicked through the pages. On every admission, we added to our page. A joke or a grumble, there was the odd drawing here and there, but on Tina’s page only her name and the words ‘I MADE IT!!!!’
Oliver pulled a sheet of paper from his pocket. “I asked Saanvi for it,” he explained as he unfolded a blank sheet of paper, the label identifying it as coming from Tina’s medical file.
“Tina was more than a medical record, and I thought we should leave a record of the real Tina.”
One by one, the page was passed around, and we recorded our favourite memories of Tina. When it was my turn, I wrote: I will always remember the night you skipped past, so excited to join Club Med. We were honoured to have you join us.
When we finished, Oliver folded Tina’s page and placed it in the back of our notebook. One by one, we each rested our hand on the door to the morgue and whispered goodnight to Tina.
I shook my head. Remembering the ghosts of my past wouldn’t help me get there. I stood and shuffled along, my constant companion rolling behind me. I passed row after row of corridors that in the daytime led to clinic consulting rooms. Here, we’d held wheelchair Olympics in ’86, followed by the spectacular water syringe fight of ’87. Oliver taped ten 50ml syringes together to make a super soaker.
Those past events always occurred on the weekend when Saanvi was in charge of our ward. Judith, the night manager covering the Monday to Wednesday shift was a strict by-the-rules person. And as such, sick patients were required to stay in their rooms.
At the end of the corridor, I sat on the last chair, which was also proudly sponsored by the Physio Department. When I stopped gasping, and my breathing returned to some semblance of normal, I stood and headed to the alcove that hid the service elevator.
I leaned on the wall of the elevator feeling the vibrations as I sunk to the basement. Although my destination now within reach, it seemed as if there still a huge distance to go. I stepped out into the straight corridor that led to the morgue keeping my eyes fixed on the lone chair in the middle of the corridor. When I finally reached it, I sat gratefully.
Oliver never consented to use a wheelchair. No matter how ragged his breathing, he insisted on walking. But this last section, between the service elevator and the morgue, was the hardest. Along the main corridor of the hospital, chairs were abundant. Most chairs were sponsored by the Physio Department, although a few had simple bronze plaques above them, naming a corporate sponsor as the benefactor of the chair. After watching Oliver struggle in this section, with nowhere to sit to regain his breath, Steve thought of a solution. I carried his tool bag while he hijacked a Physio Department chair. Oliver quirked an eyebrow at us, but he was past the point where he had enough breath to walk and talk, so he shuffled alongside us, his curiosity evident on his face.
When we got to the midpoint between the service elevator and the morgue, Steve put the chair down and told Oliver to have a rest. I plugged an extension cord into a nearby powerpoint, and Steve marked his drilling points. He fixed a simple bronze plaque he’d asked his brother, who worked in an engraving shop, to make. It was nearly identical to the sponsored chairs in the hospital, reading ‘Take a load off. This chair proudly sponsored by S.F. Roses.’
When Steve finished and stood back to show Oliver, it sparked a coughing fit. Oliver had been quick to work out the pun. S.F. Roses stood for Sixty-Five Roses. Children often mispronounced Cystic Fibrosis as sixty-five roses.
I ran my fingers over the engraving as I rested trying to regain my breath. Despite being in such a random and odd place, no one ever questioned the existence of either the chair or the plaque. And here it was fifteen years later, kindly providing a place for me to ‘take a load off’.
I ached all over. My reserves were running on empty and the walk wasn’t over yet. My head pounded, but I pushed myself up and continued. One foot after the other. Watching my feet, celebrating each step, because I knew if I looked up and saw how far I still had to go, the task would be overwhelming.
When I got to the door of the morgue, I saw a chair tucked into the alcove where our locked box was. There had never been a chair here before, but I wasn’t going to knock back this gift. I gasped from exhaustion, trying valiantly to gather my breath.
After Tina died, I’d asked Oliver, why he’d started this. He’d laughed. At sixteen he’d thought the idea of going to the morgue in the middle of the night would weed out the goody-two-shoes. He made up some bullshit about the safest time is after midnight, and no one ever questioned it. I put up my hand and laughed, “Guilty!”
I figured that with three admissions before anyone else transitioned from the children’s hospital, Oliver had had plenty of time to wander around and must have figured out the patterns of the security guards. Now I wondered if there were any security guards!
“The storage box was a bonus,” Oliver continued. “It looked abandoned, and my best guess was that it was too much trouble to remove the bolts that held it in place. There it was, a box bolted to a wall, tucked in a little alcove. All I needed was a combination lock, and it was ours. It was supposed to be a giggle, a distraction, but the night Tina died …” His voice trailed off, and he shrugged. He didn’t need to say anything else. That night changed things for everyone.
I flicked the numbers into the lock. Numbers I knew by heart now, before I reached into the box and drew out the notebook. I ran my fingers over the words Oliver wrote so long ago.
I opened the first page and with a small sigh, started to thumb through the pages. Some with only a few entries, others like mine filled the entire page. Towards the rear, Tina’s page contained its single entry.
A tear slid down my face, and I flipped back to my page and reread all my little entries. From my girlish handwriting in the beginning to the looping script I used now. I sat for a while before I picked up my pen and wrote.
Tonight I walk for Sarah.
I hesitated for a long time. Did I need to add that this would be my last walk? That there was no one left to walk after me? Would putting those words in writing be a final act of defeat? A declaration that CF had won the war?
In the end, I simply wrote the date and closed the book. I replaced it in the box and took out the file. When we’d walked for Oliver, I’d asked Saanvi for a file. It seemed right that these alternative records were bound together.
I read through each page, noting common themes. Every entry was a testament to our enduring friendship. A silent declaration that while our bond may have originated from our disease, it was not the be-all and end-all. Instead of a regular medical file, this was a record of our friendship.
I took the blank page from my pocket and added it to the file. Then I wrote for Sarah. Details of origami swans she used to leave on my lunch tray, midnight snacks at camps. Of first boyfriends and fashion disasters. I wrote until my hand cramped and the page was full.
When I finished, I closed the file and placed it back in the box. I locked the box one last time and stood. I rested my hand on the door to the morgue and whispered, “Goodnight Sarah,” before starting the slow trek back to the ward and my bed.
I leant on the wall as I waited for the service elevator, no longer having the energy to support my weight. I wasn’t exactly sure how I was going to manage the return journey. When the elevator finally pinged, and the doors slid open, Saanvi was there. Snuggled into a wheelchair sat a new canister of oxygen.
“I believe it’s time for a bottle change.”
I looked at my watch stunned to see that three hours had passed, tonight had been my longest walk. With a dramatic flair, my oxygen bottle gurgled, and the pressure of air flowing up my nose ceased.
Saanvi smiled, “Nice to see my timing is still spot on.”
She helped me into the chair and hooked up the new bottle. “As far as rules go, I’m fairly sure you’re allowed to accept help to get back to your room.”
I gave a wry smile. It wasn’t like there was anyone else left to argue the point. The return journey was remarkably swift, and once back in my room, Saanvi helped me to bed and rubbed tiger balm over my aching back. From the outside, not being able to breathe doesn’t look painful. After all, you’re merely trying to catch your breath. All you have to do is breathe. Just breathe. It’s a catchphrase you see everywhere.
If only it were that simple.
The reality is that breathing when your lungs are in respiratory failure is the hardest thing in the world. You have to breathe through the pain of seized ribs sore from coughing, breathe while the oxygen keeping you alive hurtles up your nose like a small hurricane and drying your sinuses out. Breathe with crappy lungs that no longer work. And no matter how hard you try to suck in that breath, it is never enough, and you feel like you’re drowning.
When Saanvi finished her fussing, she sat on the edge of my bed and held my hand. “Thank you for coming,” I said.
“Merely doing my job,” she said but her eyes belied the lightness in her voice.
“You’ve always known? Where we go?” I’d never asked her before, just as she never asked why we needed medical file pages. She nodded.
“Judith never understood. She was old school nursing. She’s never been sick to understand that it’s the little things, silly things that make a difference to your quality of life.”
I looked up at her my eyes open wide. Saanvi had never mentioned an illness before. She smiled and patted my hand. “Cancer.” She shrugged. “The nights were loneliest after my Amma went home to be with my sisters. That’s why I became a nurse; I wanted to be here in the lonely hours. And you lot have always needed me.”
She shrugged, and a twinkle came back into her voice, “Sometimes what you needed was for me to turn a blind eye. I knew that if one of you lot didn’t rise in the middle of the night for your little jaunt that the antibiotics weren’t working yet, or that they weren’t going to. Judith didn’t understand, to her, your shenanigans were exactly that.”
“The chair? Was that you?” I asked.
She nodded, “I thought you might need a place to rest.”
I nodded my thanks.
“Did you do what you needed to?”
I nodded, a lump rising in my throat. “It was my last walk.” After a pause, I added. “It was the last walk.”
I felt their presence again; ghostly forms that filled my room. One by one the images of my friends nodded their consent, and I felt approval for what I was about to say wrap around me like a warm blanket. I recited the only clue I was allowed to give. “To unlock the box, you’ll need the last numbers you see after midnight.”
Her eyebrows furrowed into a frown and I tapped her badge. “After midnight antibiotics, you say ‘Lights out, sleep tight.’ And that the last thing we see before we go to sleep.” She looked down and saw her ID number, 4965.
Her face lit into a smile. “I never knew I was a clue.”
I smiled and gripped her hand.
Tears filled her eyes, and she said, “I will do the last walk for you. For all of you.”
The Last Walk is an #ownvoices short story while the character of Saanvi is a nod to everyone at Sir Charles Gairdner Hospital involved in the care of Cystic Fibrosis patients from the days of B12 right through to G54.
Sandi Parsons lives and breathes stories, as a reader, writer and storyteller. She believes that every child is entitled to see themselves accurately represented in literature and the arts.
Sandi’s creative nonfiction has been published in MiNDFOOD and Frankie. She is a contributor in the Growing Up Disabled in Australia Anthology.
You can find her on the web at www.sandiwrites.com.au